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Porphyria Post



DR BRUCE WANG SELECTED AS WINNER OF “BEST PRESENTATION” AT ICPP
Dr. Bruce Wang, Porphyria Expert at UCSF and American Porphyria Foundation Protect the Future physician, has won Best Presentation at ICPP for his excellent work titled “Single Cell Transcriptomic Analysis of Hepatocytes in a Mouse Model of Porphyria Cutanea Tarda” in collaboration with B. Patkar, D. Burhan, and J. Phillips.  118 abstracts from 27 countries were submitted for presentations and posters.  Congratulations Dr. Wang!

INTERNATIONAL CONGRESS OF PORPHYRINS AND PORPHYRIAS (ICPP)
With over 500 attendees from 59 countries, the ICPP meeting held in Milan, Italy, September 8-11, was a global success. The congress began with a Patient Day, where patient advocacy groups collaborated on our work and participated in lectures. The scientific program was three days of presentations from scientists, researchers and clinicians. The APF will share detailed information and key learnings from the Congress over the next several weeks.

GLOBAL PORPHYRIA ADVOCACY COALITION FORMALIZED
GPAC has been formalized. The APF is proud to be a founding member of the Global Porphyria Advocacy Coalition, an umbrella organization for porphyria patient advocacy groups worldwide.  Work will focus on access to treatment, support, research, awareness and education of all the porphyrias.  We are stronger together!


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Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!

Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF

Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF 
The APF asked our Facebook friends for their top questions they would ask a porphyria expert.
 The following questions were submitted to Dr. Wang for his responses ... Q. Does EPP give us bad teeth? Also, do people with EPP get stomach pains or is that with the other porphyias? A. The porphyrin that accumulates in EPP patients is protoporphyrin IX, which does not cause discoloration to teeth or abdominal pain.
 The type of porphyria that leads to discolored teeth is Congenital Erythropoietic Protoporphyria. The porphyrias that lead to episodic abdominal pain attacks are the acute hepatic porphyrias. Q. I have EPP and I have a severe reaction on my hands and lips. Do I seek urgent care? Also, what can you even do when you burn your lips? A. The acute reactions to sunlight in EPP can be very severe and, unfortunately, there are not many effective options to treat the symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as ibup…